United Brachial Plexus Network, Inc.

The Social Security Administration is in the process of updating their definitions regarding neurological disorders. They are also trying to streamline the process for obtaining SSI/SSD benefits.

We (UBPN) are in the process of examining the requirement for receiving benefits and how we can advocate for the bpi community.

Over the last few years we have noted many families have had problems obtaining SSI and many OBPI/TBPI adults have had major difficulty obtaining disability benefits. This is due to a lack of understand of this injury. Sharing you experiences will help UBPN to be better advocates for the bpi community.
We would like the positive/negative feedback and suggestions from those who have had obtained or been denied benefits.

We will have a speaker from the Social Security Administration at Camp UBPN in September. Your responses will help us to be prepared with questions that can help support the needs of the bpi community in obtaining benefits.

Please respond to this post via e-mail to
KathM@ubpn.org

All information received will be kept confidential.

Please send your e-mail with either of the following subject line:
SSD Response
or
SSI Response

Thank you for your support and help
Kathleen Mallozzi
UBPN Secretary

I do not want to sound, or be percieved as a "welfare baby." the truth is that I was a very physical and independant individual until I wrecked my motorcycle and ended up like this.
But what is "this"?
The truth is that what "this" is--is an opportunity, or it is death. The opportunity, for me, has been provided by Disability Services because I qualified for SSDI. It is my education that will spring me free of the trap that this body holds for me now, it is that education that will allow me to reach those who see themselves in the same situation as me.
It is this opportunity that keeps me alive.
I'm old. I'm pulling a 4.0. I will make a difference. That is the reason that Social Security should invest in Brachial Plexus wreckage like me.
Onepaw

Onepaw
Thanks for that great reply. I am glad you were able to get the necessary help to keep you independent.Did you have to get a lawyer?

I am OBPI so 65 years into this injury. I have always been independent and worked but when overuse of good arm and secondary injuries hit me hard at 60 I had to jump through hoops to get SSD at 62. They treated it as if I had a recent injury. I was never considered disabled even as a child... I did not receive support for education because it was considered "only and arm" way back then. Also I think it depends on who you speak to when applying. This leads to problems for those of us who can no longer work.

We hope to help SSA to understand that those of us who apply for SSD after functioning at high levels are not coping out or giving up... but have reached our limits and need to change our lives in order to preserve the "unaffected" arm...

I think they need to truly understand BPI and its long term impact on us.

I know some TBPI have had so many problems getting SSD and many OBPI do not qualify. They told me because I always functioned so highly that I was to be treated as if this was a "new injury" that is after a lifetime of being almost one handed... that needs to change. From what I understand TBPI have had to get legal advice before applying or after being refused.



Kath

Kath
Obviously, I am a big proponent of educational benefits. Hopefully these benefits will come, for us, through the auspices of the SSA, no one should ride this out. What SSA needs to understand is that they have the opportunity to make a difference in the social context of how injured people like us function--that is the underlying pretext of their job, believe it or not.
I did not have to get a lawyer, but I did have to get on my horse and stick with the ride--it was not pretty. I wrote some letters, and thanks to the rather extreme circumstances of my injury, I was finally approved for benefits. However, I have never looked back from what this has meant to me. That is: an education and the opportunity to help others, nothing else, otherwise I am as well off workin the one arm cash register at seven eleven because sitting on my ass won't do me or anybody else any good. Under those circumstances why should the American taxpayer donate.
SSA should be awakened to the severity of this injury, but TBPI people need to understand the responsibility they have to use the darkness of these circumstances to the benefit of the world around them.
Ours is a unique experience.
onepaw